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Endocrine Withdrawal Syndrome after stopping HRT
Hello,
I am wondering if anyone has experienced endocrine withdrawal syndrome after stopping hormone replacement therapy? I am 54 years old. Last June, I was prescribed Premarin .45 and 100 mg progesterone daily to combat hot flashes. I felt great the first month, then felt horrible by September, like I was overmedicated. I then stopped cold turkey. Two days later, I was awoken in the middle of the night by a heart rate of 155 and high blood pressure that lasted a few minutes. I went to ER and they couldn't find anything. A month later, I started having tachycardia episodes, high and low blood pressure episodes, shaking, extreme insomnia, feeling like I was wired, anxiety and dread, etc, all day and night. After 3 paramedic visits, 2 ER visits, an endocrinologist, rheumatologist, cardiologist, gynecologist and a PCP, all giving me a full workup and blood tests, they didn't find anything wrong with me. I felt like I was going to die. I ended up couch bound for 7 weeks. The endocrinologist thinks I may have had endocrine withdrawal syndrome that mimicked opioid withdrawal syndrome. Apparently this can be a thing after discontinuing estrogen. He put me on .25 divigel and no progesterone. I am slowly stabilizing, but still have occasional symptoms that are or mimic POTS (postural orthostatic tachycardia syndrome). I can function somewhat but am nowhere near my original energetic self and it is destroying my life. Has this happened to anyone else? How did you fix it? Thank you.
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@gravity3
It was the provider that had me switch over to the Biest cream. I didn’t c/t, rather, I tried to switch over to much lower dose and delivery method of HRT. I think my brain adjusted to the higher amount of estrogen that I was receiving from the patch and went into shock when I switched to a cream that has a lot less estrodial in it. I think providers should be aware of cross tapering HRT width regards to dosing.
Yes, I am in that group, too and I also replied to the woman on Reddit. She is doing better, now--she Pm'ed me. How long were you on P and how did the withdrawal come about? I used a low dose cream for 6 years and was fine... then new provider switched me to 100 oral and after two months all hell broke loose. Now 2 weeks out from all cream and 7 weeks from oral P and unable to sleep and paranoid and completely FLAT effect like I am a zombie and yet unbearable anxiety. What is your situation? Do you have any advice? When you say akathisia, what does that entail? I have terrible SI and fear of going crazy all day long. Nights are worse for the dread.
Also, I had successfully recovered from using benzos 10 years ago. Not sure if you share that. Seems to be a crossover issue.
@gravity3 The new provider said it wouldn't be an issue and had much better results. Functioned like a benzo and went right to my brain, and had an inverse reaction. I had been a low dsoe cream for 6 years with only 25 mg. progesterone. successfully, even after being on benzos. Very scary and very sad.
@gravity3 I was told by Drs to quit using bio-identical hormones because at 72 years old I am having bleeding and not scheduled till the 29th for ultrasound. I don’t get much on pad but see small clots old blood coming out every time Zio use bathroom. I feel like something going on with period like it feels like my dried up ovaries are letting go .
@miriza
It is shocking to me that so many women seem not to be started on hrt slowly and the are trying to stop without slow withdrawal of hrt.
@mars54
So, you still have your ovaries?
@gravity3 Yes
@achase311 I truly hope things have calmed down for you.
I’m in the throes of trying to recuperate from estrogen w/d. I ended up reinstating-couldn’t function otherwise.
This is truly destabilizing
Has anyone on here recovered? I am having a really hard time. Restarted the estradiol patch. Still feeling really off psychologically. At this point, I’m wondering if the brain is still recuperating from all the changes it’s been through over the past month
(Going down to a low dose of ) then going back up or is this my on hormonal state now. Provides don’t understand. Feels like I’m figuring this out on my own.
*going down on a low dose of E (for clarification).